RARE HUB PARTNERS
Adira Foundation Global Genes Little Hercules Foundation National Fragile X Foundation National MPS Society National PKU Alliance Parent Project Muscular Dystrophy
BOARD OF DIRECTORS The Foundation Board of Directors is comprised of individuals with decades of experience in the government, nonprofit, finance, science, medicine, industry, and academic sectors. Several board members are the parents of children with a rare disease, enabling them to offer firsthand knowledge of the challenges facing the rare disease community. Mark Dant, Chair Executive Director, Ryan Foundation
Frank Sasinowski, MS, MPH, JD, Vice Chair Director, Hyman, Phelps & McNamara P.C.
Rare Access Action Project RARE-X Run for Rare Sick Cells SYNGAP1 Foundation Undiagnosed Diseases Network Foundation
Julia Jenkins, President Executive Director, EveryLife Foundation for Rare Diseases Jennifer Bernstein, Secretary Executive Vice President, Horizon Government Affairs Vicki Seyfert-Margolis, PhD, Treasurer Founder and CEO, MyOwnMed
$10, 000- $24,000 American Society of Gene & Homology Medicines Cell Therapy Invitae Corporation Amryt Pharma Jazz Pharmaceuticals Applied Therapeutics Kiniksa Pharmaceuticals AstraZeneca Matthew R. Patterson Boehringer-Ingelheim NS Pharma International Passage Bio CenterView Partners LLC PerkinElmer Chiasma Inc. Pharming Chive Charities Spark Therapeutics Cowen Inc. The Assistance Fund Daiichi Sankyo Company United Therapeutics Enzyvant Therapeutics Zogenix, Inc. EVERSANA
Emil Kakkis, MD, PhD, Founder President/CEO, Ultragenyx Ritu Baral, Member Managing Director Senior Biotechnology Analyst, Cowen and Company Richard S. Finkel, Member Director of Experimental Neurotherapeutics in Translational Neuroscience Program, St. Jude Children's Research Hospital Stephen C. Groft, Member Special Volunteer, National Center for Advancing Translational Sciences at NIH Abbey Hauser, Member Young Adult Rare Disease Advocate
Amrit Ray, MD, MBA, Member Chief Patient Officer, Biohaven Pharmaceuticals 14
